CT Hops For Hope Beer Festival To Raise A Glass For Charity

John Woike, jwoike@courant.com

From left: Jay Thibodeau, Nikki Vinci, Dan Smith and Steve Wood are friends who are planning a beer festival on behalf of a Wood's son, who has a rare genetic disorder. The friends met through their mutual interest in Connecticut beer.

From left: Jay Thibodeau, Nikki Vinci, Dan Smith and Steve Wood are friends who are planning a beer festival on behalf of a Wood's son, who has a rare genetic disorder. The friends met through their mutual interest in Connecticut beer. (John Woike, jwoike@courant.com)

Friends plan local beer festival to benefit research for rare disorder

Two summers ago, a group of Connecticut friends — who had united over a shared love of craft beer — threw on costumes honoring characters from their favorite brewery's can designs and teamed up to consume as many buffalo wings as they could stomach in a short amount of time. When the speed-eating contest had ended and they'd wiped the last traces of orange sauce from their faces, the "CT Brew Crew," as they called themselves, had raised $5,375 for the Make-a-Wish Foundation.

The team's efforts in the "Wings for Wishes" fundraiser at J. Timothy's Taverne in Plainville had a personal connection: one of its members, a cancer survivor, had benefited from the foundation as a teenager.

In late 2014, team member Jay Thibodeau was motivated to plan another event for another charity, and a friend suggested an organization near and dear to one of their group: the Smith-Magenis Syndrome Research Foundation.

Stephen Wood of West Hartford is known for Connecticut Museum Quest, an extensive website full of his findings on the state's museums, landmarks, hiking trails, history, restaurants and, especially, the recently burgeoning craft beer scene, of which he has particular knowledge and interest. He's also the father of a 9-year-old son with Smith-Magenis Syndrome, a rare disorder resulting from a microdeletion within the 17th chromosome. SMS is characterized by a recognizable pattern of specific physical, behavioral, and developmental features, which vary in severity between individuals. Since Damian was diagnosed shortly after his second birthday, Wood has become an outspoken, passionate advocate for him and others around the world with the same disorder.

With their friend and his son at the forefront of their minds, Thibodeau and friends Dan Smith and Nikki Vinci began pulling together a special event — an intimate craft beer festival "by beer geeks, for beer geeks," showcasing many of the local breweries Wood has highlighted on his website. The planning was done entirely unbeknownst to Damian's father — though they vaguely asked him if he was "available on Aug. 30 for something really cool." They didn't share their official plans until several months into it, when they had secured a venue and several sponsors for what would become CT Hops for Hope, happening at the Quartette Club in New Britain.

It's American Craft Beer Week, so what better way to celebrate than to visit a local brewery and crack open a cold one of Connecticut's finest.

"I said I don't want Steve to have any knowledge of this whatsoever," Thibodeau said, until they were ready to tell him what they'd organized. When they finally broke the news, "it was a pretty cool phone call, that's for sure," Wood said. On his website, he wrote that he and his wife, Hoang, "are humbled and filled with gratitude."

Thibodeau and Vinci say the participating breweries and other sponsors have offered "tremendous support" for the event, especially if they're familiar with Wood and his story, or are aware of the tight-knit Connecticut beer community that gathered to raise funds two years ago. "There have been so many places that, as soon as you mention to them what we're doing, [they say] 'Absolutely anything you need,'" Thibodeau said. "We've had a lot of that."

"Steve has written so extensively about Connecticut beer for so long that he has become a resource," Vinci said. She became friendly with Wood and the other organizers years ago, as the craft beer and social media coordinator for J. Timothy's. "That's one of the reasons why I think [sponsors] all were on board, because he's been so supportive of Connecticut beer, and we can get this money to [SMSRF]; it brings more awareness to it."

Wood said Connecticut Museum Quest began when Damian was born, as he and his wife, parents of a new baby, found themselves with limited ability to travel. Instead, they began to explore attractions within their own home state. As their son's developmental delays became more noticeable, and even after they received his official diagnosis, "I just kept going," Wood said. He continued to bring Damian along on many of his trips to local destinations, including breweries and restaurants. The purpose was twofold, he said: Not only did it keep Damian busy and occupied, it helped people in the community get to know him and learn more about his disorder.

That same community has embraced the idea of a fundraiser brewfest for his cause. The CT Hops for Hope organizers planned to begin selling tickets in mid-June, but as word got out, would-be attendees asked them to put tickets on sale earlier. When sales began on May 22, the early-bird entrances, with offerings of limited-release brews and food from sponsoring restaurants, sold out in 20 minutes. General admission tickets are still available, featuring tastings from about 24 breweries.

All of the proceeds from ticket sales will benefit the Smith-Magenis Syndrome Research Foundation, which supports research to improve the knowledge and understanding of SMS so that viable therapeutic options can be developed, according to its website. The foundation supports the SMS Initiative at Baylor College of Medicine in Houston, where two dedicated research scientists and their staff will focus on the study of the genomic disorder and the RAI1 gene that people with SMS are usually missing.

Wood said funding for the foundation almost always comes through grassroots efforts.

"Governmental funds for research for rare syndromes [are] not exactly flying through the air right now," he said. "Science is not cheap, it's expensive. And to keep the lab going, to have the latest equipment to do genomic research obviously involves very expensive instrumentation and the staff to do it. Any money we can give them to keep them going, to keep focused on this, is wonderful."

Damian's disorder, which Wood calls "rare and underdiagnosed" (it's estimated that SMS occurs in roughly 1 in 25,000 live births) presents a variety of challenges, with intellectual, physical and behavioral delays. Disrupted sleep patterns are characteristic of SMS, which can exacerbate the violent tantrums and self-injurious behavior that are among the disorder's known features. But despite these daunting struggles, Wood describes his son as incredibly sweet and empathetic. "The difficult behaviors they display are the syndrome, not 'them,'" he said.

"This is not something you can just 'fix," Wood said of SMS. "Early intervention, continued therapies, the best environments possible [are] what gets us through our days and weeks." But, he added, "genomic research shows an incredibly bright future."

An anonymous donor has offered $50,000 to the SMS Research Foundation in the form of a challenge grant, meaning all funds donated to the foundation through Sept. 15 will be matched up to that amount. The fundraising goal for the brewfest is $30,000, through ticket sales, sponsorship and associated donations, the organizers said.

In the inaugural year for CT Hops for Hope, its planners aim to keep the event manageable so that attendees have the best experience possible. "I want people to walk away from this event and say, 'I can't wait until next year,'" Thibodeau said.

CT Hops For Hope will be held Aug. 30 from 1 to 4 p.m. at the Quartette Club, 225 Wooster St., New Britain. General admission tickets are $45. Information: cthopsforhope.com.